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Beta-thalassemia major is a chronic disorder of blood, having an extensive impact on the affected child. It involves lifelong therapeutic regime, with repeated blood transfusions. With improved life expectancy, due to improved medical management psychosocial aspects of thalassemia are gaining importance.

Objective:

To assess the behavioral problems in multi-transfused thalassemic children and psychosocial factors affecting them.

Setting:

The study was conducted in a tertiary care level hospital and research institute catering mainly to a population of low socioeconomic status.

Design:

The study was a cross-sectional study involving 50 multi-transfused thalassemic children of age 5–10 years.

Materials and Methods:

Fifty multi-transfused thalassemic children, aged 5–10 years, not suffering from any other major medical illness, were included. Child Behavior Check List (Achenbach) (CBCL) was used to collect data from each parent regarding the child's behavior. Parental Attitude Scale (Rangaswamy 1989) was applied. Descriptive statistical analysis was used with analysis of variance (ANOVA) and Student's t test to find the significance of data.

Results:

The CBCL total scores were high in 32% patients, indicating the presence of behavioral problems. Higher CBCL scores were found in children of older age group, those with poor school performance, whose mothers’ education was more than eighth standard, had history of death of thalassemic relative in family, greater duration of diagnosed illness, poor pre-transfusion hemoglobin level, and who had longer periods of school absenteeism.

Conclusions:

Behavioral problems are common in multi-transfused thalassemic children. Early diagnosis and intervention of behavioral problems in these children would make them cope with thalassemia better.

Major thalassemia is a hereditary, chronic blood disease caused by the synthesis deficiency of one or more polypeptide chains of globin during childhood. This leads to the rise of blood pressure and family tensions. Therefore, the coping strategies of the family could seriously affect and facilitate the thalassemic child's healthy growth. The present research sought to investigate the mental health and coping strategies of families with major thalassemic children in Bandar Abbas in 2013.

Materials and Methods:

This study is of a descriptive-analytical and cross-sectional type. Research population consisted of 140 parents of major thalassemic children who visited Shahid Mohammadi Hospital of Bandar Abbas. The instruments used were the 12-item General Health Questionnaire of Goldberg and Williams along with the coping strategies questionnaire. Nonprobabilistic, convenient sampling method was used. To analyze the data, Spearman's correlation coefficient, Chi-square and descriptive statistical tests were used. The significance level was set at P < 0.05.

Results:

Data analysis showed that parents’ mental health (32 ± 4.25) along with their coping strategy scores (45 ± 7.50) was about the average. The most prevalent coping strategies among the parents were represented as: “I trust in God in order to get my problems solved” (87%), “to get mentally and spiritually relieved, I would visit mosques and holy shrines” (53%), and “to overcome problems, I make harder attempts” (50.7%). A significant correlation was found between the parents’ coping strategies and general health (P < 0.001). A significant correlation was also observed between mother's educational level (P = 0.044), age (P = 0.022) and general health.

Discussion and Conclusion:

According to the results of this research, it is categorical for the ministry of health and medical education and those in charge to pay special and adequate attention to the social, spiritual, and mental health of these children and their families.

Thalassemia is an inherited blood disease. It is a serious public health problem throughout the Mediterranean region, the Middle East and the Indian subcontinent, as well as in Southeast Asia.

Objectives:

Thalassemia is an inherited blood disease. It is a serious public health problem. In this study we assessed psychological aspects in Iranian children and adolescents with thalassemia major.

Patients and Methods:

In this case-control study sixty healthy subjects aged 7-18 years and Sixty Patients with confirmed diagnosis of major thalassemia were enrolled. After obtaining informed consent from parents of all participating thalassemia patients and healthycontrols, we assessed psychological aspects and quality of life by Pediatric Quality of LifeTM (PedsQL™), Strengths and Difficulties Questionnaires (SDQ), State and Trait Anxiety, Children's Depression Inventory (CDI).

Results:

The results of this study indicate that there are significant changes in depression, anxiety, QOL and behavioral screening between children with thalassemia major compared with healthy subjects by means of both parents and children reports. According to the results, children with thalassemia major have more psychological problems than healthy ones. Patients with thalassemia have a lower QOL than their peers (P = 0.001), the rate of depression is higher in this group (P = 0.015), Also behavioral problems in these children are more than healthy subjects (P = 0.009).

Conclusions:

We recommend appropriate treatment and counseling procedures in addition to specific treatment of thalassemia. According to the results we suggest to establish pediatric psychiatric clinics beside thalassemic clinics to cure psychological aspects of the disease.

The reproductive and sexual health issues concerning persons affected by thalassemia major are complex. The study was planned to investigate the psychological attitudes and expectations in a group of thalassemic pregnant women attending hospital for regular blood transfusion.

METHODS:

This is a preliminary cross-sectional study involving 20 consecutive thalassemic patients and a control group of 42 healthy pregnant volunteers. The personality structure was evaluated by Rorschach’s test and the presence of psychic symptoms by SCL-90-R and STAI.

RESULTS:

Narcissism and sexual traumas are significantly higher in thalassemic women with respects to the control group. Also the percent of anxiety and depression observed with the SCL-90-R was significantly higher than in control group (45% vs. 3%, p < 0.001, mean and SD values are 1.65 ± 0.15 vs. 0.43 ± 0.18 for anxiety; 55% vs. 12%, p < 0.001, mean and SD values are 1.76 ± 0.18 vs. 0.85 ± 0.25 for depression). The score observed with the STAI shows that the trait of anxiety differed between thalassemic pregnant women and the control group, even though the score values aren’t pathologic in neither group (87% vs. 42%, p < 0.05, mean and SD values are 33 ± 0.8 vs. 22 ± 0.2).

CONCLUSIONS:

This study addresses the need for developing, implementing and evaluating proper psychological support for thalassemic pregnant patients. Moreover, psychological screening and support prior to, during and following pregnancy would be indicated.

Beta thalassemia major has a considerable impact on quality of life. The purpose of this study was to determine the life satisfaction of beta-thalassemic children and adolescents compared to healthy controls.

Methods:

This research, conducted in 2009, was a controlled, cross-sectional study in which beta-thalassemic patients, who were being followed-up by the Thalassemic Center in Bushehr, a city in southern Iran, were compared with a healthy control group. The Multi-dimensional Student Life Satisfaction Scale (MSLSS) was used to measure the participants’ quality of life in five domains. The chi-squared test, t-test, Pearson’s Product Moment Correlation, and multiple regression analysis were used for the statistical analyses.

Results:

The unadjusted mean scores of three of the domains, i.e., school, friends, and living environment, and the total score of five domains, i.e., school, friends, living environment, family, and self, were significantly higher in thalassemic patients than in the control group (P < 0.05). These significant differences were persistent after adjusting the mean scores of the three domains and the total score of the five domains for age, gender, and educational level.

Conclusion:

The thalassemic patients were more satisfied with life than the healthy controls in Bushehr. Many factors may be responsible for this finding. The results of this study suggest that the attitude of parents and society concerning assigning responsibility to patients should be assessed. The assessment should include comparing the satisfaction with life of thalassemic patients with that of their healthy siblings and conducting national studies on the quality of life of thalassemic patients and their satisfaction with life.

Jiong Li and colleagues examine mortality rates in children who lost a parent before 18 years old compared with those who did not using population-based data from Denmark, Sweden, and Finland.

Please see later in the article for the Editors' Summary

Background

Bereavement by spousal death and child death in adulthood has been shown to lead to an increased risk of mortality. Maternal death in infancy or parental death in early childhood may have an impact on mortality but evidence has been limited to short-term or selected causes of death. Little is known about long-term or cause-specific mortality after parental death in childhood.

Methods and Findings

This cohort study included all persons born in Denmark from 1968 to 2008 (n = 2,789,807) and in Sweden from 1973 to 2006 (n = 3,380,301), and a random sample of 89.3% of all born in Finland from 1987 to 2007 (n = 1,131,905). A total of 189,094 persons were included in the exposed cohort when they lost a parent before 18 years old. Log-linear Poisson regression was used to estimate mortality rate ratio (MRR). Parental death was associated with a 50% increased all-cause mortality (MRR = 1.50, 95% CI 1.43–1.58). The risks were increased for most specific cause groups and the highest MRRs were observed when the cause of child death and the cause of parental death were in the same category. Parental unnatural death was associated with a higher mortality risk (MRR = 1.84, 95% CI 1.71–2.00) than parental natural death (MRR = 1.33, 95% CI 1.24–1.41). The magnitude of the associations varied according to type of death and age at bereavement over different follow-up periods. The main limitation of the study is the lack of data on post-bereavement information on the quality of the parent-child relationship, lifestyles, and common physical environment.

Conclusions

Parental death in childhood or adolescence is associated with increased all-cause mortality into early adulthood. Since an increased mortality reflects both genetic susceptibility and long-term impacts of parental death on health and social well-being, our findings have implications in clinical responses and public health strategies.

Please see later in the article for the Editors' Summary

Editors' Summary

Background

When someone close dies, it is normal to grieve, to mourn the loss of that individual. Initially, people who have lost a loved one often feel numb and disorientated and find it hard to grasp what has happened. Later, people may feel angry or guilty, and may be overwhelmed by feelings of sadness and despair. They may become depressed or anxious and may even feel suicidal. People who are grieving can also have physical reactions to their loss such as sleep problems, changes in appetite, and illness. How long bereavement—the period of grief and mourning after a death—lasts and how badly it affects an individual depends on the relationship between the individual and the deceased person, on whether the death was expected, and on how much support the mourner receives from relatives, friends, and professionals.

Why Was This Study Done?

The loss of a life-partner or of a child is associated with an increased risk of death (mortality), and there is also some evidence that the death of a parent during childhood leads to an increased mortality risk in the short term. However, little is known about the long-term impact on mortality of early parental loss or whether the impact varies with the type of death—a natural death from illness or an unnatural death from external causes such as an accident—or with the specific cause of death. A better understanding of the impact of early bereavement on mortality is needed to ensure that bereaved children receive appropriate health and social support after a parent's death. Here, the researchers undertake a nationwide cohort study in three Nordic countries to investigate long-term and cause-specific mortality after parental death in childhood. A cohort study compares the occurrence of an event (here, death) in a group of individuals who have been exposed to a particular variable (here, early parental loss) with the occurrence of the same event in an unexposed cohort.

What Did the Researchers Do and Find?

The researchers obtained data on everyone born in Denmark from 1968 to 2008 and in Sweden from 1973 to 2006, and on most people born in Finland from 1987 to 2007 (more than 7 million individuals in total) from national registries. They identified 189,094 individuals who had lost a parent between the age of 6 months and 18 years. They then estimated the mortality rate ratio (MRR) associated with parental death during childhood or adolescence by comparing the number of deaths in this exposed cohort (after excluding children who died on the same day as a parent or shortly after from the same cause) and in the unexposed cohort. Compared with the unexposed cohort, the exposed cohort had 50% higher all-cause mortality (MRR = 1.50). The risk of mortality in the exposed cohort was increased for most major categories of cause of death but the highest MRRs were seen when the cause of death in children, adolescents, and young adults during follow-up and the cause of parental death were in the same category. Notably, parental unnatural death was associated with a higher mortality risk (MRR = 1.84) than parental natural death (MRR = 1.33). Finally, the exposed cohort had increased all-cause MRRs well into early adulthood irrespective of child age at parental death, and the magnitude of MRRs differed by child age at parental death and by type of death.

What Do These Findings Mean?

These findings show that in three high-income Nordic countries parental death during childhood and adolescence is associated with an increased risk of all-cause mortality into early adulthood, irrespective of sex and age at bereavement and after accounting for baseline characteristics such as socioeconomic status. Part of this association may be due to “confounding” factors—the people who lost a parent during childhood may have shared other unknown characteristics that increased their risk of death. Because the study was undertaken in high-income countries, these findings are unlikely to be the result of a lack of material or health care needs. Rather, the increased mortality among the exposed group reflects both genetic susceptibility and the long-term impacts of parental death on health and social well-being. Given that increased mortality probably only represents the tip of the iceberg of the adverse effects of early bereavement, these findings highlight the need to provide long-term health and social support to bereaved children.

Additional Information

Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001679.

The UK National Health Service Choices website provides information about bereavement, including personal stories; it also provides information about children and bereavement and about young people and bereavement, including links to not-for-profit organizations that support children through bereavement

The US National Cancer Institute has detailed information about dealing with bereavement for the public and for health professionals that includes a section on children and grief (in English and Spanish)

The US National Alliance for Grieving Children promotes awareness of the needs of children and teens grieving a death and provides education and resources for anyone who wants to support them

MedlinePlus provides links to other resources about bereavement (in English and Spanish)

Thalassemic disorders are the most prevalent monogenic hereditary diseases around the world caused by decreased and altered synthesis or agenesis in one or more globin chains. Families who have a child with thalassemia major face a myriad of significant problems. Hormozgan province ranks second with thalassemic patients in Iran. Therefore, current research is aimed to analyze the reproductive behavior of such families in the southern province of Iran.

Methods:

In this descriptive study 190 mothers of patients suffering from thalassemia major were included. The reproductive behavior of mothers was investigated by a questionnaire regarding the number of thalassemic infants born after their first child with thalassemia major.

Results:

About 23% of these mothers had more than 1 child with major thalassemia. The findings showed that the reasons for conception among these mothers were to have a healthy child (64.2%) and to have a boy (20%). In about 92.6% of mothers CVS test was not performed.

Conclusion:

This study showed that awaring mothers and families regarding the prevention of birth of afflicted infants and provision of accessible diagnostic facilities can reduce the number of children with thalassemia major.

The aim of this study was to assess the prevalence in the general population of parents' concerns about the development of their child, to identify groups at risk and to assess the association between parents' concerns and professional judgement.

Methods

We obtained cross-sectional data on a Dutch nationally representative sample of children aged 14 months, 3 3/4, 5–6 and 8–12 years within the setting of routine well-child visits provided to the entire population. A total of 4,107 participated (response rate 85.3%). Data were about concerns that parents reported by questionnaire before the visit regarding behavioural and emotional problems, developmental delay, consequences of disease and contact with peers that needed professional assistance, and about the assessment of these domains by doctors and nurses during the visit. Moreover, we obtained data on parent-reported psychosocial problems using the Infant-Toddler Social and Emotional Assessment and the Child Behavior Checklist.

Results

Of all parents, 49.3% reported some concerns and 8.7% reported frequent concerns, most frequently on child behaviour. Frequent concerns were most likely to refer to young children, children from labour immigrant families, with fathers of medium educational level and in low-income families. The prevalence rates of professional-assessed parenting problems were much lower than parent-reported ones. The rates of psychosocial problems were highest in the case of shared concerns, but also higher if parents expressed concerns that were not confirmed by professionals.

Conclusion

A very large proportion of parents of young children have concerns regarding their child, but agreement on these concerns with child health professionals is relatively low.

Deliberate Self-Harm (DSH) is a common problem among children and adolescents in clinical and community populations, and there is a considerable amount of literature investigating factors associated with DSH risk and the effects of DSH on the child. However, there is a dearth of research examining the impact of DSH on parents, and there are few support programmes targeted at this population. This cross-sectional study examines the profile of a sample of parents of young people with DSH who participated in a support programme (Supporting Parents and Carers of young people with self-harm: the SPACE programme), with the goal of investigating pre-test parental well-being, family communication, parental satisfaction, perceived parental social support, and child strengths and difficulties.

Methods

Participants were 130 parents who attended the SPACE programme between 2009 and 2012, and who completed six questionnaires at baseline: the General Health Questionnaire-12, Strengths and Difficulties Questionnaire, Kansas Parenting Satisfaction Scale, General Functioning Scale of the McMaster Family Assessment Device, Multidimensional Scale of Perceived Social Support, and a demographic questionnaire.

Results

The majority of parents met criteria for minor psychological distress (86%) and rated the quantity and severity of their children’s difficulties as being in the abnormally high range (74%) at baseline. A majority of participants (61%) rated their perceived social support as being poor. Lower parental well-being was significantly correlated with poorer family communication, poorer parenting satisfaction, and a greater number of difficulties for the child. Perceived social support was not significantly correlated with parental well-being. Parents whose children were not attending school at baseline had significantly lower well-being scores than those whose children were. Parents whose children had received a formal diagnosis of a mental health disorder also had significantly lower well-being scores than those whose children had not.

Conclusions

Parents of young people with DSH behaviours face considerable emotional and practical challenges; they have low levels of well-being, parenting satisfaction, social support, and experience poor family communication. Given the importance of parental support for young people with DSH behaviours, consideration should be given to the need for individual or group support for such parents.

Severe disease in a parent is associated with increased psychosocial problems in their children. However, moderating factors of such associations are less studied. In this cross-sectional population-based controlled study we examined the moderating effects of a history of parental cancer on the association between impaired health status in parents and psychosocial problems among their teenagers. Among families with both parents responding to the adult Health Survey of Nord-Trøndelag County of Norway (the HUNT-2 study) 71 couples were identified with primary invasive cancer in one parent. Their 81 teenage children took part in the Young-HUNT study. These families were compared to 322 cancer-free families with 328 teenagers. Based on self-report data the relations between three variables of parental impaired health and six psychosocial problems in teenagers were analyzed family wise by structural equation modeling. Significant associations between parental and teenagers' variables were observed in eight of 18 models. A history of parental cancer was a significant moderator which decreased four of eight significant associations. Such a history significantly weakened the associations between parental poor self-rated health and teenagers' anxiety/depression and school problems. A similar association of a history of parental cancer was found between psychological distress in parents and teenagers' feelings of loneliness and poor self-rated health. This study confirmed strong associations between impaired parental health and psychosocial problems in their teenagers. A history of parental cancer weakened several of the significant associations between parental impaired health variables and psychosocial problems in their teenagers.

Chronic nature of thalassemia causes changes in different aspects of life in patients, including their quality of life. Because of the important role of family in caring for children with thalassemia, this study was done to evaluate the effect of family-centered empowerment model on quality of life of the children aged 6-12 years with thalassemia in Kerman Thalassemia Center.

METHODS:

The present experimental study was carried out on 86 thalassemic children aged 6-12 years who were randomly divided into case and control groups. Data collection tools consisted of demographic and general quality of life questionnaires in children that included physical, emotional and social aspects in addition to school functions. The questionnaires were used after determination of content validity and reliability by internal correlation method. This model was performed in test group according to four steps (threat perception, problem solving, educational participation and evaluation). Quality of life was measured 1.5 months after the intervention.

RESULTS:

The results showed that the average quality of life of thalassemic children before the intervention was 26.23 in test group and 27.62 in the control group and they were not significantly different (p > 0.05). However after performing the model, the average quality of life in the test group reached 35.19 while it was 28.02 in control group and the observed difference was statistically significant (p < 0.05).

CONCLUSIONS:

According to the impact of this model on quality of life in thalassemic children, it is recommended that evaluating the effectiveness of this model should be considered in further studies of other ages and other chronic diseases.

Psychological therapies have been developed for parents of children and adolescents with a chronic illness. Such therapies include interventions directed at the parent only or at parent and child/adolescent, and are designed to improve parent, child, and family outcomes. This is an updated version of the original Cochrane review published in Issue 8, 2012, (Psychological interventions for parents of children and adolescents with chronic illness).

Objectives

To evaluate the efficacy of psychological therapies that include parents of children and adolescents with chronic illnesses including painful conditions, cancer, diabetes mellitus, asthma, traumatic brain injury (TBI), inflammatory bowel diseases (IBD), skin diseases, or gynaecological disorders. We also aimed to evaluate the adverse events related to implementation of psychological therapies for this population. Secondly, we aimed to evaluate the risk of bias of included studies and the quality of outcomes using the GRADE assessment.

Search methods

We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE and PsycINFO for randomised controlled trials (RCTs) of psychological interventions that included parents of children and adolescents with a chronic illness. Databases were searched to July 2014.

Selection criteria

Included studies were RCTs of psychological interventions that delivered treatment to parents of children and adolescents with a chronic illness compared to an active control, waiting list, or treatment as usual control group.

Data collection and analysis

Study characteristics and outcomes were extracted from included studies. We analysed data using two categories. First, we analysed data by each individual medical condition collapsing across all treatment classes at two time points. Second, we analysed data by each individual treatment class; cognitive behavioural therapy (CBT), family therapy (FT), problem solving therapy (PST) and multisystemic therapy (MST) collapsing across all medical conditions. For both sets of analyses we looked immediately post-treatment and at the first available follow-up. We assessed treatment effectiveness for two primary outcomes: parent behaviour and parent mental health. Five secondary outcomes were extracted; child behaviour/disability, child mental health, child symptoms, family functioning, and adverse events. Risk of bias and quality of evidence were assessed.

Main results

Thirteen studies were added in this update, giving a total of 47 RCTs. The total number of participants included in the data analyses was 2985, 804 of whom were added to the analyses in the update. The mean age of the children was 14.6 years. Of the 47 RCTs, the studies focused on the following paediatric conditions: n = 14 painful conditions, n = 13 diabetes, n =10 cancer, n = 5 asthma, n = 4 TBI, and n = 1 atopic eczema. We did not identify any studies treating parents of children with gynaecological disorders or IBD. Risk of bias assessments of included studies were predominantly unclear. Evidence quality, assessed using the GRADE criteria, was judged to be of low or very low quality.

Analyses of separate medical conditions, across all treatment types, revealed two beneficial effects of psychological therapies for our primary outcomes. First, psychological therapies led to improved adaptive parenting behaviour in parents of children with cancer post-treatment (standardised mean difference (SMD) −0.20, 95% confidence interval (CI) −0.36 to −0.04, Z = 2.44, p = 0.01). In addition, therapies also improved parent mental health at follow-up in this group (SMD = −0.18, 95% CI −0.32 to −0.04, Z = 2.58, p = 0.01). We did not find any effect of therapies for parent behaviour for parents of children with a painful condition post-treatment or at followup, or for parent mental health for parents of children with cancer, diabetes, asthma, or TBI post-treatment. For all other primary outcomes, no analysis could be conducted due to lack of data.

Across all medical conditions, three effects were found for the primary outcomes of psychological therapies. PST had a beneficial effect on parent adaptive behaviour (SMD = −0.25, 95% CI −0.39 to −0.11, Z = 3.59, p < 0.01) and parent mental health (SMD= −0.24, 95% CI −0.42 to −0.05, Z = 2.50, p = 0.01) immediately post-treatment and this effect was maintained at follow-up for parent mental health (SMD= −0.19, 95% CI −0.34 to −0.04, Z = 2.55, p = 0.01). The remaining analysis for PST on parent behaviour found no effect. No effects were found for CBT post-treatment or at follow-up for either parent outcome. For FT, only one analysis could be run on parent mental health and no effect was found. Due to lack of data, the remaining analyses of primary outcomes could not be run. For MST, no parent outcomes could be analysed due to lack of data.

Secondary outcome analyses are presented in the Results section. Five studies reported that there were no adverse events during the trial. The remaining 42 studies did not report adverse events.

Authors’ conclusions

This update includes 13 additional studies, although our conclusions have not changed from the original version. There is little evidence for the efficacy of psychological therapies that include parents on most outcome domains of functioning, for a large number of common chronic illnesses in children. However, psychological therapies are efficacious for some outcomes. CBT that includes parents is beneficial for reducing children’s primary symptoms, and PST that includes parents improved parent adaptive behaviour and parent mental health. There is evidence that the beneficial effects can be maintained at follow-up for diabetes-related symptoms in children, and for the mental health of parents of children with cancer and parents who received PST.

Children affected by their parents’ dual drug use and HIV/AIDS face considerable challenges to their psychosocial development, including parent dysfunction and foster care placement. While HIV/AIDS may increase parents’ mobilization of social support, their drug use may restrict who is available to help them, with potential implications to the adjustment of their children with whom they remain in contact. This study sought to identify dually affected children’s living situations, and parent and parent’s support network factors as correlates of children’s externalizing problem behaviors. An urban community sample of 462 HIV seropositive, current or former drug-using parents were queried about their children aged 5–15 years old. One hundred ninety-four children were reported by 119 parents. The outcome was children’s externalizing behaviors of ever having been suspended or expelled from school, criminal-justice system involvement, or illicit drug or heavy alcohol use. Independent variables included kin and drug users in parent’s support network. Generalized estimating equations were used to adjust for the potential correlation of children of the same parent. Among parents, 63% were mothers, 57% current opioid or cocaine users, 85% were African American, 35% had AIDS or CD <200, and 53% had high depressive symptoms (CES-D ≥ 16); median age was 38. Among children, median age was 12; 23% lived with the nominating parent, 65% with other family, and 11% in non-kin foster care. While only 34% of parents reported child custody, 43% reported daily contact with their child, and 90% reported high emotional closeness. Parents reported externalizing behaviors among 32% of the children. Logistic regression indicated that externalizing behavior was positively associated with parent’s physical limitations and proportion of illicit drug users in parent’s support network. A significant interaction was found indicating that the effect of parent’s support network-level drug use was greater for children living with versus not living with the parent. The model adjusted for parent’s current drug use and depressive symptoms, which were not significant. Results indicate that while only a minority of these dually affected children lived with the parent, the parents’ physical limitations and embeddedness in drug using support networks, particularly if living with their children, was associated with the children’s maladjustment. It is plausible that these factors interfere with parenting, expose the children to conflict or adverse social influences, or obligate children to assume caregiving for their parent. While dually affected children’s contact with their parents may have important benefits, results suggest it presents ongoing needs for intervention with the children, their parents, and caregivers.

Objectives. Skeletal complications in β-homozygous thalassemic patients are uncommon but often debilitating, even amongst children and adolescent patients with well maintained transfusion and chelation therapy. The aim is to evaluate the biochemical markers of bone turnover in regularly transfused thalassemic patients and its possible correlations with demographic data and hematological and biochemical markers. Methods. In this prospective cross-sectional study, 36 β-thalassemia major patients were enrolled from March 2012 to March 2014. All patients underwent complete blood counts, LFTs, serum ferritin, serum calcium, phosphorus, serum albumin, alkaline phosphatase, 25-OH vitamin D, and parathormone (PTH) levels. Results. There were 17 males and 19 females with mean age of 12.56 ± 5.9 years. Hypocalcemia and hypophosphatemia were seen in 66.6% and 19.4%, respectively, while 25-OH vitamin D deficiency was present in 72.2% of thalassemic children and adolescents. Hypoparathyroidism was seen in 13.8% while hyperparathyroidism was detected in 8.3% of patients. There was direct correlation between serum phosphorus and ferritin levels (P < 0.05). No correlation was found between indirect bilirubin and skeletal parameters, calcium and parathyroid hormone (P > 0.05). Conclusions. Biochemical profile is significantly altered in patients with β-thalassemia major and bone associated biochemical abnormalities like hypocalcaemia, 25-OH vitamin D deficiency, and hypophosphatemia are not uncommon in Pakistani patients with thalassemia major.

The thalassemias are autosomal recessive disorders which result in reduced production of one or more subunits of hemoglobin. They are a growing public health concern. Prognosis is improving, however, there is a lack of estimates of the affected population, resources for prevention, control and management in the country. In light of recent findings on the severity and genetics of this inherited disorder, the authors aimed to summarize information on the epidemiology, screening, diagnostic procedures such as high performance liquid chromatography and genetic analysis of thalassemias in the Philippines.

Methods

Patients referred by hematologists from different parts of the country from 2008 to 2014 were included in the study. Peripheral blood extracted from the subjects were hemolyzed and subjected to VariantTM high performance liquid chromatography (HPLC) for detection of thalassemias and hemoglobinopathies. Genomic DNA extracted in 55 clinically diagnosed beta thalassemic patients subsequently underwent GAP PCR and direct sequencing. In an ongoing study, extracted genomic DNA from 20 alpha thalassemic patients was analyzed using alpha thalassemia strip assay and direct sequencing.

Results

HPLC results showed that majority of the patients were beta thalassemics (47%) followed by alpha-thalassemics (15%). HbE disease was also found in 1% of the population. Interestingly, thalassemia and hemoglobinopathy interactions such as beta thalassemia with HbE interaction (2.2%) and alpha-beta thalassemia (0.4%) have also been reported. Of the 55 clinically diagnosed beta thalassemics who underwent molecular analysis, 10 published beta globin gene defects were observed in 35 patients. The FIL deletion was found to be the most prevalent mutation among the alpha thalassemic patients.

Conclusions

Preliminary data on the thalassemias suggest that these disorders deserve priority in the country’s health agenda. The Philippines still faces many challenges in the provision of basic care for thalassemic patients. The prevention of severe alpha and beta thalassemia is dependent on the availability of molecular characterization, supported by genetic counselling and targeted public awareness programs. This will reduce the economic burden and comprehensive and effective management of this problem in our country will be better achieved.

Families are the primary source of support and care for most children. In Western societies, 4 to 12% of children live in households where a parent has a chronic illness. Exposure to early-life stressors, including parenting stress, parental depression and parental chronic disease could lead to harmful changes in children’s social, emotional or behavioural functioning. Little is known about the child living with a parent who has Multiple Sclerosis (MS). We systematically reviewed the literature regarding possible effects of having a parent with MS on the child’s or adolescent's psychosocial adjustment.

Methods

The following databases: MEDLINE, PsychInfo, CINAHL, EMBASE, Web of Knowledge, ERIC, and ProQuest Digital Dissertations were searched (from 1806 to December 2012). References from relevant articles were also manually searched. Selected studies were evaluated using the Graphic Appraisal Tool for Epidemiology (GATE).

Results

The search yielded 3133 titles; 70 articles were selected for full text review. Eighteen studies met inclusion criteria. Fourteen studies employed quantitative techniques, of which 13 were cross-sectional and one was longitudinal. Four studies were both qualitative and cross-sectional in design. Only 2 of 18 studies were rated as having high methodological quality. Overall, eight studies reported that children of MS patients exhibited negative psychosocial traits compared with children of “healthy” parents. Specifically for adolescents, greater family responsibilities were linked to lower social relationships and higher distress. Three studies indicated that parental MS was associated with positive adjustment in children and adolescents, such as higher personal competence, while four found no statistically significant differences.

Conclusion

Although having a parent with MS was often reported to have negative psychosocial effects on children and adolescents, there was a lack of consensus and some positive aspects were also found. However, few high quality studies were identified which makes it difficult to draw evidence-based conclusions at this point. There are potentially important, long-term impacts of early life stressors, such as having a parent with a chronic disease, on subsequent life chances and health, and thus more extensive and higher quality research in this area is greatly needed.

There are some reports in which a condition of zinc deficiency and its associated outcomes with a change in concentration of serum copper among the thalassemic patients has been highlighted. The aim of this prospective study was to determine the serum zinc and copper levels in children with beta-thalassemia major.

Methods

In this cross sectional study all children under 12 years affected by beta thalassemia major (40 patients) were evaluated for serum zinc and copper levels in Qazvin thalassemia center (Qazvin, Iran) in 2007. Serum measurements for zinc and copper were performed by atomic absorption spectrophotometer.

In young children with type 1 diabetes mellitus (T1DM) parents have full responsibility for the diabetes-management of their child (e.g. blood glucose monitoring, and administering insulin). Behavioral tasks in childhood, such as developing autonomy, and oppositional behavior (e.g. refusing food) may interfere with the diabetes-management to achieve an optimal blood glucose control. Furthermore, higher blood glucose levels are related to more behavioral problems. So parents might need to negotiate with their child on the diabetes-management to avoid this direct negative effect. This interference, the negotiations, and the parent's responsibility for diabetes may negatively affect the quality of parent-child interaction. Nevertheless, there is little knowledge about the quality of interaction between parents and young children with T1DM, and the possible impact this may have on glycemic control and psychosocial functioning of the child. While widely used global parent-child interaction observational methods are available, there is a need for an observational tool specifically tailored to the interaction patterns of parents and children with T1DM. The main aim of this study is to construct a disease-specific observational method to assess diabetes-specific parent-child interaction. Additional aim is to explore whether the quality of parent-child interactions is associated with the glycemic control, and psychosocial functioning (resilience, behavioral problems, and quality of life).

Methods/Design

First, we will examine which situations are most suitable for observing diabetes-specific interactions. Then, these situations will be video-taped in a pilot study (N = 15). Observed behaviors are described into rating scales, with each scale describing characteristics of parent-child interactional behaviors. Next, we apply the observational tool on a larger scale for further evaluation of the instrument (N = 120). The parents are asked twice (with two years in between) to fill out questionnaires about psychosocial functioning of their child with T1DM. Furthermore, glycemic control (HbA1c) will be obtained from their medical records.

Discussion

A disease-specific observational tool will enable the detailed assessment of the quality of diabetes-specific parent-child interactions. The availability of such a tool will facilitate future (intervention) studies that will yield more knowledge about impact of parent-child interactions on psychosocial functioning, and glycemic control of children with T1DM.

Several studies have found that parents of children with chronic diseases or disabilities have higher depression scores than control parents. Mothers usually take on the considerable part of the extra care and support that these children need and thus are at markedly increased risks of suffering from psychological distress and depression. The main aim of the present study was to investigate if mothers of children with thalassemia or blood malignancies have higher scores of depression compared with a group of control mothers.

Methods and materials

In this cross – sectional study, 294 mothers were recruited in three groups and assessed using the Beck Depression Inventory (BDI): mothers of children with thalassemia, mothers of children with blood malignancies and a control group. SPSS version 11.5 with chi square, ANOVA, linear and logistic regression were used for statistical analysis.

Results

The only variable bearing a statistically significant relationship with the depression score of mothers was the child's disease: for thalassemia with OR of 2.17 (95% CI = 1.16–4.0, P = 0.015), for blood malignancies with OR of 2.71 (95% CI = 1.48–4.99, P = 0.001).

Discussion and conclusion

The results of this study can contribute to the development of a screening program for decreasing depression burden and promoting quality of life for mothers of children with thalassemia or blood malignancies.

Rosana Norman and colleagues conduct a systematic review and meta-analysis to assess the relationship between child physical abuse, emotional abuse, and neglect, and subsequent mental and physical health outcomes.

Background

Child sexual abuse is considered a modifiable risk factor for mental disorders across the life course. However the long-term consequences of other forms of child maltreatment have not yet been systematically examined. The aim of this study was to summarise the evidence relating to the possible relationship between child physical abuse, emotional abuse, and neglect, and subsequent mental and physical health outcomes.

This overview of the evidence suggests a causal relationship between non-sexual child maltreatment and a range of mental disorders, drug use, suicide attempts, sexually transmitted infections, and risky sexual behaviour. All forms of child maltreatment should be considered important risks to health with a sizeable impact on major contributors to the burden of disease in all parts of the world. The awareness of the serious long-term consequences of child maltreatment should encourage better identification of those at risk and the development of effective interventions to protect children from violence.

Please see later in the article for the Editors' Summary

Editors' Summary

Background

Child maltreatment—the abuse and neglect of children—is a global problem. There are four types of child maltreatment—sexual abuse (the involvement of a child in sexual activity that he or she does not understand, is unable to give consent to, or is not developmentally prepared for), physical abuse (the use of physical force that harms the child's health, survival, development, or dignity), emotional abuse (the failure to provide a supportive environment by, for example, verbally threatening the child), and neglect (the failure to provide for all aspects of the child's well-being). Most child maltreatment is perpetrated by parents or parental guardians, many of whom were maltreated themselves as children. Other risk factors for parents abusing their children include poverty, mental health problems, and alcohol and drug misuse. Although there is considerable uncertainty about the frequency and severity of child maltreatment, according to the World Health Organization (WHO) about 20% of women and 5%–10% of men report being sexually abused as children, and the prevalence of physical abuse in childhood may be 25%–50%.

Why Was This Study Done?

Child maltreatment has a large public health impact. Sometimes this impact is immediate and direct (injuries and deaths), but, more often, it is long-term, affecting emotional development and overall health. For child sexual abuse, the relationship between abuse and mental disorders in adult life is well-established. Exposure to other forms of child maltreatment has also been associated with a wide range of psychological and behavioral problems, but the health consequences of physical abuse, emotional abuse, and neglect have not been systematically examined. A better understanding of the long-term health effects of child maltreatment is needed to inform maltreatment prevention strategies and to improve treatment for children who have been abused or neglected. In this systematic review and meta-analysis, the researchers quantify the association between exposure to physical abuse, emotional abuse, and neglect in childhood and mental health and physical health outcomes in later life. A systematic review uses predefined criteria to identify all the research on a given topic; a meta-analysis is a statistical approach that combines the results of several studies.

What Did the Researchers Do and Find?

The researchers identified 124 studies that investigated the relationship between child physical abuse, emotional abuse, or neglect and various health outcomes. Their meta-analysis of data from these studies provides suggestive evidence that child physical abuse, emotional abuse, and neglect are causally linked to mental and physical health outcomes. For example, emotionally abused individuals had a three-fold higher risk of developing a depressive disorder than non-abused individuals (an odds ratio [OR] of 3.06). Physically abused and neglected individuals also had a higher risk of developing a depressive disorder than non-abused individuals (ORs of 1.54 and 2.11, respectively). Other mental health disorders associated with child physical abuse, emotional abuse, or neglect included anxiety disorders, drug abuse, and suicidal behavior. Individuals who had been non-sexually maltreated as children also had a higher risk of sexually transmitted diseases and/or risky sexual behavior than non-maltreated individuals. Finally, there was weak and inconsistent evidence that child maltreatment increased the risk of chronic diseases and lifestyle risk factors such as smoking.

What Do These Findings Mean?

By providing suggestive evidence of a causal link between non-sexual child maltreatment and mental health disorders, drug use, suicide attempts, and sexually transmitted diseases and risky sexual behavior, these findings contribute to our understanding of the non-injury health impacts of child maltreatment. Although most of the studies included in the meta-analysis were undertaken in high-income countries, the findings suggest that this link occurs in both high- and low-to-middle-income countries. They also suggest that neglect may be as harmful as physical and emotional abuse. However, they need to be interpreted carefully because of the limitations of this meta-analysis, which include the possibility that children who have been abused may share other, unrecognized factors that are actually the cause of their later mental health problems. Importantly, this confirmation that physical abuse, emotional abuse, and neglect in childhood are important risk factors for a range of health problems draws attention to the need to develop evidence-based strategies for preventing child maltreatment both to reduce childhood suffering and to alleviate an important risk factor for later health problems.

Additional Information

Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001349.

The World Health Organization provides information on child maltreatment and its prevention (in several languages); Preventing Child Maltreatment: A Guide to Taking Action and Generating Evidence is a 2006 report produced by WHO and the International Society for Prevention of Child Abuse and Neglect

The US Centers for Disease Control and Prevention provides information on child maltreatment and links to additional resources

The National Society for the Prevention of Cruelty to Children (NSPCC) is a not-for-profit organization that aims to end all cruelty to children in the UK; Childline is a resource provided by the NSPCC that provides help, information, and support to children who are being abused

The Hideout is a UK-based website that helps children and young people understand domestic abuse

Childhelp is a US not-for-profit organization dedicated to helping victims of child abuse and neglect; its website includes a selection of personal stories about child maltreatment

There is little information in the research literature on how parents of children who spend time in a neonatal intensive care unit (NICU) adapt psychologically to the demands of caregiving beyond the initial hospitalization period. Our aim was to compare parents of NICU children with parents of healthy full-term children, looking specifically at the relationship between parental psychosocial health and child characteristics, as well as the relationship between important predictor variables and psychosocial health.

Methods

A cross-sectional survey was sent to parents as their child turned 3 1/2 years of age. The setting was the province of British Columbia, Canada. The sample included all babies admitted to tertiary level neonatal intensive care units (NICU) at birth over a 16-month period, and a consecutive sample of healthy babies. The main outcome was the SF-36 mental component summary (MCS) score. Predictor variables included caregiver gender; caregiver age; marital status; parental education; annual household income; child health status; child behavior; birth-related risk factors; caregiver strain; and family function.

Results

Psychosocial health of NICU parents did not differ from parents of healthy children. Child health status and behavior for NICU and healthy children were strongly related to MCS score in bivariate analysis. In the pooled multivariate model, parental age, low family function, high caregiver strain, and child's internalizing and externalizing behavioral symptoms were independently associated with lower psychosocial health. In addition, female gender was associated with lower psychosocial health in the NICU group, whereas lower education and child's problem with quality of life indicated lower psychosocial health in the healthy baby group.

To estimate the prevalence of positive screens for social-emotional problems among preschool-aged children in a low-income clinical population and to explore the family context and receptivity to referrals to help guide development of interventions.

Design

Observational, cross-sectional study.

Setting

Two urban primary care clinics.

Participants

A total of 254 parents of 3- and 4-year-old children at 2 urban primary care clinics.

Twenty-four percent (95% CI, 16.5%-31.5%) of children screened positive for social-emotional problems. Among those screening positive, 45% had a parent with depressive symptoms, and 27% had no nonparental child care. Among parents of children who screened positive for social-emotional problems, 79% reported they would welcome or would not mind a referral to a counselor or psychologist; only 16% reported a prior referral.

Conclusions

In a clinical sample, 1 in 4 low-income preschool-aged children screened positive for social-emotional problems, and most parents were amenable to referrals to preschool or early childhood mental health. This represents an opportunity for improvement in primary prevention and early intervention for social-emotional problems.

Thalassemia is the most common monogenic disease in South-East of Iran. Despite the 70% reduction in Iranian thalassemia cases after thalassemia control comprehensive program, 601 affected babies were born in Sistan and Balouchistan Province, Iran from 2002 to 2010, so this study aims at investigating the causes of new thalassemia cases.

Methods:

Data from this retrospective cross-sectional study was collected through interviews and information in the patients’ hospital records.

Results:

Data revealed that 52.4% of fathers and 78.4% of mothers of thalassemic children had elementary education or less. In addition, 78.6% of the couples did not undergo premarital screening for thalassemia and 71.2% of the couples were not notified of their own minor thalassemia until a child was born with major thalassemia. Of the diagnosed minor couples, about 25% did PND and the others did not carry out because mothers were unaware of proper gestational age and of the importance of this issue, financial problems, and the husbands’ disagreement to take the tests. Moreover, 16 mothers, in spite of being diagnosed of having a major fetus, refused to terminate the pregnancy.

Conclusion:

The most preventable causes for affected births include couples’ unawareness of being minor and unawares of the PND importance and process.

Management of Type 1 diabetes comes with substantial personal and psychological demands particularly during adolescence, placing young people at significant risk for mental health problems. Supportive parenting can mitigate these risks, however the challenges associated with parenting a child with a chronic illness can interfere with a parent’s capacity to parent effectively. Interventions that provide support for both the adolescent and their parents are needed to prevent mental health problems in adolescents; to support positive parent-adolescent relationships; and to empower young people to better self-manage their illness. This paper presents the research protocol for a study evaluating the efficacy of the Nothing Ventured Nothing Gained online adolescent and parenting intervention which aims to improve the mental health outcomes of adolescents with Type 1 diabetes.

Method/Design

A randomized controlled trial using repeated measures with two arms (intervention and wait-list control) will be used to evaluate the efficacy and acceptability of the online intervention. Approximately 120 adolescents with Type 1 diabetes, aged 13–18 years and one of their parents/guardians will be recruited from pediatric diabetes clinics across Victoria, Australia. Participants will be randomized to receive the intervention immediately or to wait 6 months before accessing the intervention. Adolescent, parent and family outcomes will be assessed via self-report questionnaires at three time points (baseline, 6 weeks and 6 months). The primary outcome is improved adolescent mental health (depression and anxiety). Secondary outcomes include adolescent behavioral (diabetes self-management and risk taking behavior), psychosocial (diabetes relevant quality of life, parent reported child well-being, self-efficacy, resilience, and perceived illness benefits and burdens); metabolic (HbA1c) outcomes; parent psychosocial outcomes (negative affect and fatigue, self-efficacy, and parent experience of child illness); and family outcomes (parent and adolescent reported parent-adolescent communication, responsibility for diabetes care, diabetes related conflict). Process variables including recruitment, retention, intervention completion and intervention satisfaction will also be assessed.

Discussion

The results of this study will provide valuable information about the efficacy, acceptability and therefore the viability of delivering online interventions to families affected by chronic illnesses such as Type 1 diabetes.

Psychosocial functioning is poor in patients with pectus excavatum (PE). However, a comprehensive understanding of this issue does not exist. The aim of this study was to assess the severity of psychosocial problems as associated with PE, as well as to identify its risk factors.

Methods

A comparative study was performed at the Sichuan Academy of Medical Sciences/Sichuan Provincial People's Hospital in Chengdu, China. Patients age 6 to 16 who admitted to the outpatient department for the evaluation or treatment for PE were included in the study. In addition to parental reports of child psychosocial problems on the Achenbach Child Behavior Checklist (CBCL), parents also filled in other structured questionnaires, including socio-demographic variables, patients' medical and psychological characteristics. The severity of malformation was assessed by CT scan. For comparison, an age- and gender- matched control group was recruited from the general population. The socio-demographic and scores on CBCL were compared between patients and control subjects. Univariate and multivariate analysis were performed to examine risk factors for psychosocial problems in patients.

Results

No statistically significant differences were found with respect to social-demographic variables between children with PE and control subjects. Compared with control subjects, children with PE displayed higher prevalence of psychosocial problems in the different scales of the CBCL questionnaire such as 'withdraw', 'anxious-depressed', 'social problems' and 'total problems'. Both univariate and multivariate analyses suggested that age, severity of malformation, and being teased about PE were significantly associated with patients' psychosocial problems.

Conclusions

The information derived from this study supports the opinion that children with PE have more psychosocial problems than children from the general population. Multiple medical and psychosocial factors were associated with patients' impairment of psychosocial functioning.